Although Jennifer is considered a paraplegic she, like everyone with a spinal cord injury, is a little different. She explains: “I’m not a true T paraplegic because breaking my neck did damage some of the nerves up top. Like I have my finger function and I have my arm function but it’s not as strong as a true T and there’s some things that I’m limited on like raising my arms and stuff—I have a hard time with that.” Her unique functional level has prompted her to research extensively and work with rehab professionals to find the right solutions for her, be it her manual wheelchair, minivan or the various tools she uses for her activities of daily living.
Before her injury, Jennifer worked in a factory as a part of a team assembling large mechanical parts. She would like to return to work, but not in an office environment—instead she wants to work on the shop floor again. She has a community agency advocate discussing her work plans with her previous employer’s Human Resources Department and she hopes she can get back to work in the near future.
However, Jennifer currently has her hands full planning the construction of a new house. She says, “Housing is probably the biggest deal that [a disabled person] will ever have to go through.” On top of designing the home to suit her needs, she has to contend with the insurance company that is financing the project.
Jennifer is quite aware that if people don’t stay active after a spinal cord injury, they “can become kind of dormant in a way.” For this reason, Jennifer tries to stay as active as possible in her spare time. Indeed, she is much stronger than she was when she was discharged from her rehab centre.
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While in rehab, Jennifer assessed many wheelchairs before she decided which one was right for her. She was looking for sturdiness from her wheelchair at that point, and knew she did not want a folding chair because she found “that the rigid is a lot more stable. The collapsibles are kind of wobbly and rickety and I don’t know, I just don’t like the look of them … I wasn’t very strong when I was leaving [rehab] and I wasn’t able to do a lot of things like wheelies and curb-jumping and stuff like that….” For this reason, Jennifer chose a chair that she describes as a “sturdy wheelchair. It was something I felt comfortable in. I tried many wheelchairs and the rigidness of this one just felt really comfortable.” She felt confident that it would suit her needs for years to come. However, her strength and wheelchair manoeuvring skills improved dramatically in the community and as they both increased, she found that the chair was holding her back because it was too heavy.
Within a year of receiving her first chair, Jennifer went back to her rehab centre to get a lighter chair. “It had to be done. I couldn’t progress … I was going to outpatient physio to learn advanced wheelchair skills, and to do it in my old chair, it would be so frustrating you just wouldn’t imagine.” Jennifer learned that she wanted a chair with a “tight front end so that your legs don’t get in the way when you want to turn in tight corners. [In my old chair], my feet were sticking out which, it makes it hard to get around. Lightness of course, just for breaking down your wheelchair, bringing it into a car, or if you want to do a wheelie, or if you want to jump up on curbs; to have a bulky wheelchair just, it makes it a lot harder.”
She worked with an occupational therapist and a wheelchair vendor to specify a titanium-framed chair to match her strength, level of activity and skill level. “It’s very light. It’s compact, it’s everything that I wanted.” Jennifer reflects on the process: “It’s a total learning experience because when you first have a spinal cord injury you don’t really know about different makes and models of wheelchairs, and you sort of—not wing it—but you have guidance from therapists. But you do the best you can when you’re getting your first wheelchair and it was totally a learning experience. And now I know what I want and how I want it made.”
Jennifer also put a lot of consideration into a cushion to complement her new lightweight chair. “It’s a honeycomb cushion and it’s made for people in wheelchairs who don’t have a lot of meat on their bones—it has really good pressure points, and it’s extremely light. I had a foam cushion before and to take that off my wheelchair it must have weighed like thirty pounds; it’s really heavy. With my new one, to change cushion covers or to wing it into my car or whatever, it makes it extremely light and easy.”
Jennifer chose a back for her chair that is easily adjusted to an individual’s postural requirements. The back can be moved up or down to give the appropriate amount of support, and the design allows the lumbar support to be adjusted so, as Jennifer says, “your posture is nice and straight and you sit aligned on your hips.” Jennifer adds, “The only thing I don’t like about it is, because there are so many moving parts on it, it needs a lot of tightening maintenance.”
Jennifer chose three-spoke, composite rear wheels for her chair because they are known for their rigidity and good looks. She has found though, that others have had problems with the hubs of the wheels and they are heavier than regular spoked wheels. Jennifer believes, “For what they’re worth I don’t think you’re getting a good wheel, … but if you want the look then you sort of bypass [the problems].” Jennifer’s wheelchair vendor informed her that there are many new wheel types on the market now, so she is considering replacing her tri-spoke wheels. Her first priority is to find a lighter set of wheels that are easier to transfer in and out of her car. She may purchase a regular spoked pair of wheels, but she is also looking into the most current technology that uses fibre spokes that look like regular steel spokes, but are much stronger. Fewer spokes are needed, thus reducing the weight of the wheel. Plus, she adds, “they’re supposed to look really neat.”
Jennifer also got an all-terrain manual wheelchair while still in rehab. A friend who was close to being discharged from the rehab centre was taking one on a test drive through the hallway when Jennifer spotted it. “So I thought that would be an amazing [chair for me]. And plus living where I live, it’s grassy and traily and there’s a lot of things nature-wise to do out here.” She admits, “I definitely was putting the cart before the horse because I was probably in no shape to use it but I had the funding to get it and I knew that I was going to be improving in the future, so instead of improving and not having something to improve on and then doing the prescription, I thought I’m just going to get it now because it’s available to me and I know that it takes a long time to get chairs. You’ve got to do a lot of prescribing and funding and stuff like that so I thought the opportunity is here, I might as well just take it.”
Jennifer describes the chair: “The all-terrain has big knobby wheels on it for pushing around. And the casters are probably the size of a sandwich plate so they’re really big. So to cut through the sand or rocks, it’s really sturdy. You can really go over hills and rifle down them and not worry about your casters sticking in and flipping the chair so it’s really good for out in nature kind of wheeling.” She adds, “I can just pummel through anything and not worry about flipping over or wheels digging in and getting stuck or any of that, so it’s really good.”
The all-terrain chair has to be taken apart though, before Jennifer can put it in her van. Since the chair was designed with large, wide wheels and higher-than-average camber for stability, it is too wide to be pushed up the van’s ramp. Jennifer can put the chair in the van herself, but she usually gets someone to take a wheel off, then roll it in and replace the wheel.
Jennifer keeps up with the latest wheelchair technology by searching the Internet, reading disability-related magazines and keeping in touch with her wheelchair vendor on a regular basis. “Every month or so I’ll give them a call and I’ll say, ‘What’s new on the market?’ If I need like some maintenance out here with the wheelchair or my commode or whatever, I always ask her to bring pamphlets on new wheels or any new information they have coming in, I’ll ask for it.”
One of Jennifer’s primary objectives right now is to stay active and fit. She says, “One thing when you’ve been let out of rehab and you’re in a transition where you’re recovering, you’re either not going back to work right away or you’re just taking a time-out and just gathering yourself again. You can become kind of dormant, … which is at times horrible because you’re stuck in your house or you just get caught in a slump and if you don’t keep active, things start to creep up on you.” She hopes that when her house is built, that she will be able to set up a home gym, complete with standing frame. She also wants to get a hand-cycle, but currently she has no place to store any more equipment.
For now, Jennifer goes to her local YMCA to work out. “They don’t have a lot of equipment for someone with a spinal cord injury, but the trainers do try and make the best of the time you’re there.” Jennifer has even donated a set of wheelchair rollers so she, or anyone else in a chair can push their chair on top of the rollers, much like a stationary bike. The rollers are made of two cylinders that are mounted horizontally in a frame, low to the ground. They have enough space between them for wheelchair wheels to spin. The rollers are accessed by backing up a small ramp onto the cylinders.
Jennifer says, “At least if the track is busy I can go down and use the [wheelchair rollers] and do my cardio.” She adds, “It’s good for getting your heart rate up and it’s also good for rolling backwards, because always rolling forward with the repetitive motion in your shoulders … can actually curve your shoulders. So to sit and just constantly roll backwards and not worry about bumping into walls or running over people, it works out really well.”
Jennifer says about a standing frame, “that would be one big thing that I’m missing in my life. It’s one thing that’s really necessary in my life.” She continues, “Well it’s good just for keeping your body healthy…. [It helps with] osteoporosis in your hips and it’s good for your body to be standing upright again, weight bearing…. Your bowels are happy, your organs are happy and you have a happy body.”
Jennifer currently drives a minivan that has been modified with a ramp, suspension that lowers to make the ramp less steep for entering and exiting, a six-way swivel seat that allows her to transfer to the driving position, and commercially available hand controls. When asked why she transfers instead of driving from her wheelchair, Jennifer responds, “I enjoy sitting in the captain’s chair because I can recline it and I can position it and stuff like that so I like it, especially [because] I do a lot of long drives…. I love to drive so I’m always driving somewhere, so just to get out of my wheelchair is a good break.” She chose to have a side-entry ramp instead of a rear-entry ramp because, “I find with the ramps that come out of the back of the van, it really takes up a lot of your space inside…. And then that still allows me to have a backseat in case I have passengers.”
When the van was first prescribed for her, Jennifer was not very enthusiastic about it: “Going from little four-door cars and stuff [before the accident] to a big family minivan, I was like, ‘Oh no, this is just not cool.’” But she admits, “I just wasn’t ready for a car. My transfers were horrible. I didn’t have the strength at all and I realized, it would make my life a heck of a lot easier if I just had a van. I’m so happy I did it now. And I love the ramp. I love the way it’s been modified and [the vehicle modification company] did an excellent job. And yeah sure, electronic things and stuff they go down, so what are you going to do? You’ve got to get them fixed.”
Jennifer has had her share of mechanical problems with the modified parts of her van. The motor that raises and lowers the ramp burnt out after only two years; Jennifer feels that the van modification company tried to save some money by putting in an under-powered model, which was subsequently discontinued. After raising the issue with the company, they installed a new, more powerful motor and did not charge Jennifer for the replacement. Her power seat also stopped working because, she says, “It moved so much and there’s so many wiring bundles underneath it and as wires get old they get kind of hard so I guess as soon as I started to move it one day it snapped one of the little wires underneath and my chair stuck.” This repair was also done for Jennifer free of charge.
Jennifer knows that if the ramp motor breaks down again she will be able to access the van. “[The ramp] is not all on a hydraulic system so if the van breaks down or the ramp breaks down in the van, you flip a switch that takes the ramp out of gear and then you can push it down or pull it up manually and it’s fine.” Even if she locks her keys in the van, Jennifer knows she won’t be stranded: “[The modification firm] put, a thing in the rear taillight that’s a magnet sensor. So if I hold a magnet up to the rear taillight, it’ll actually activate my door and pull the ramp down…. The van is pretty foolproof to get in and out of.”
Jennifer is now planning on buying “an amazing little wheelchair-friendly car … for my enjoyment.” She looked around at car shows and dealers to find a fun, small car into which she could transfer both herself and her wheelchair. “The one beautiful thing about this car is the doors open right out straight so you have the whole complete side of the seat and the inside to wheel up to get to, in your wheelchair. And the driver’s seat raises and lowers … and it’s actually a wide car, so when you put down the passenger seat and put down your seat in order to get the frame of your wheelchair into the back, there’s a lot of space. And just the height of the car is a beautiful height for wheelchairs. It’s not a low transfer at all…. You would think someone in a wheelchair designed it.”
Since Jennifer does not want to cover the inside of her new car with snow and slush, she will still drive her van in the winter time. The van is “pretty easy to keep clean inside. I don’t mind getting into it with a snowy wheelchair because it just melts away and there isn’t a carpet on the floor so if the floor gets really dirty I just go in there with a mop and bucket and I just give it a wash out.”
As her discharge from rehab approached, Jennifer knew that she had to find a temporary place to live while she determined what form her permanent residence would take. Her parents owned a “completely non-modifiable” home and were planning on moving to a bigger house, so they purchased one with Jennifer in mind. Since Jennifer was staying temporarily, they made only minimal barrier-free modifications to the home: “We removed the carpet and we put hardwood flooring down and that’s throughout the whole main floor, my bedroom, the living room, and then when we built the roll-in shower and accessible washroom, we put tile in there. We also put a ramp on the back deck so that I have a way out the back of the house, and we put a porch lift in the garage so that I have a way up and down in through the garage door.” Jennifer adds, “We didn’t want to spend a lot of money on this house because it takes away from money spent on my house when it’s being built.”
Jennifer hired a company to report on what modifications were necessary to make her parents’ new home barrier-free. They, in turn, suggested a contractor to do the necessary work. Jennifer was very pleased with the work they did, and plans on using the same contractor to build her new home. Jennifer has decided though, to do the design work on her own this time instead of hiring the professional design firm again. “Anything that they can do I could pretty much think of myself just from experience now and plus coming from it first hand, I really know what I want. Plus, they’re enormously expensive … they insanely overcharged.” Her approach so far, has been to observe what designs work for other people and then figure out a way to modify the design to suit her needs. She has already visited many places to get good ideas for her kitchen layout and plans to visit others to investigate elevators. “I want to go out and compare what type of elevator would be best suited for me. What’s the one that’s the most cost-efficient, but that doesn’t break down that much.”
Jennifer has learned from experience that she wants to minimize the number of mechanical devices in her new home because they eventually break down. She almost got stuck on the lift in her parents’ garage once, for example. “I went to get out on the porch lift and hit the button to go down. It made this screaming noise and then everything just stopped. And it may have moved down about half an inch so I was so lucky … I would have been so stuck because no one would have been able to get into the house because the outside garage door would have been closed. All the doors in the house would have been locked and I would have been stuck halfway down on my ramp. So I was so lucky that it didn’t move. It broke down right way. I had to go through for a week and a half without my porch lift. To get in and out of the house, going out the back way, like if it rains or, or anything it’s just an inconvenience.” Jennifer plans to dig a deeper than average basement and lower the main floor of the house so she can have level access from her garage, patio or deck to the house. A level entrance also eliminates the need for a ramp leading to the front door, which appeals to Jennifer. “I want my house so that if you were to look at it from the street, you wouldn’t know that a person in a wheelchair lives there.” She has also decided that she wants a two-storey home because, “I just like the look of a two-storey house. I find that bedrooms should be upstairs and the living area should be on the main floor and the utility stuff should be on the basement floor … and for resale value, I find that a two-storey home is just more appealing than a bungalow.”
Jennifer uses the Internet for a lot of her research and actually found her home design there. She found several companies that sell blueprints so one can build their own home. “You put in how much footage at the front, how much footage of length. And then it’ll spit you out a whole bunch of pictures of houses that meet those requirements.” It took her a long time to search through all of the design firms on the Internet, as well as all of the home designs each one offers, but she found one she was very happy with. She printed the basic floor plans and elevations offered for free and showed them to her builder and the local building department. They both agreed that the house would fit on the lot and could be built to local building regulations, so Jennifer ordered the full set of construction drawings. Very few modifications will have to be made to the drawings: Jennifer is putting a roll-in shower in a spot where a whirlpool tub was designed to go, and she is adding an elevator shaft that will have stops in her bedroom, the living room and the laundry room in the basement. She will be counting on her contractor to implement all of the details that make her standard house plan into one that suits her needs. But she has a lot of confidence in his abilities. “[The contractor] said that he’s going to spend an extra amount of time on my house. He’s going to be at the site every day and making sure that everything is going well. And we’re going to be talking back and forth a lot, going over everything to make sure that it’s suited for me so I totally trust him. He’s really good.”
Jennifer forewarns anyone planning to build their own accessible home that “Housing is probably the biggest deal that you’ll ever have to go through. There’s a lot of things that have to be resolved, especially if your insurance company is going to be helping you with financing the modifications. I’ve had lawyers working on this and my [community agency] manager has been working on this. Housing has been going since the get-go. So it will be the biggest thing anybody in a wheelchair will have to tackle.”
Like many, Jennifer received a lot of equipment at discharge to help her with her activities of daily living. She started off using her commode chair for her daily bathroom activities, she says, “just because I wasn’t in the greatest shape to do a lot of transfers….” After her strength started to improve, her OT suggested that she stop using the commode chair and switch to a raised toilet seat and shower bench in order to increase her independence. The extra transfers tired Jennifer: “I just thought, it took me half an hour longer to do all this stuff because it was just so exhausting than to just get on my commode, roll over the toilet and then roll into the shower and do everything within twenty minutes. I just found it was easier and less stressful than using all the transfers and the raised toilet seat and the bath bench so I definitely have gone back to using the commode because it makes life easier.”
Jennifer’s OT prescribed a hospital-type bed for her so she could raise and lower her head and legs. Jennifer explains the benefits: “The [hospital-type] bed was prescribed in the beginning because I had a hard time getting up in bed … and I did most of all my cathing in bed. So to have the bed positioned to hold me upright it just made it a lot easier.” She adds, “Now I use the [hospital-type] bed is to raise the foot of the bed so that it’s completely level with my commode, and then I can just do a level transfer from my bed to the commode. Also I get a lot of water retention in my legs. So I can raise the foot of the bed up so that I can drain my legs.” Jennifer has added pull handles, made from thin rope, to both sides of the bed. She attached them to the carrying handles that came with the mattress. She uses them to help her roll in bed and to sit up if needed. She keeps them out of the way when not in use to avoid getting pressure sores from accidentally lying on them.
Jennifer also purchased a reclining chair that moves into and out of the recline position electronically. “It’s super comfy. Yeah just wanted to get something that I can rest in and watch TV and I wanted like a Lazy Boy but it’s always just so hard doing the big stick on the side and pulling your legs in and out. So this one’s all done by a remote.”
Jennifer has already figured out what type of sofa she is going to buy for her new home: “It’s going to have to be like a firm couch … anything squishy, it’s hard to get around on. Plus, fabric really grabs onto your clothes and it’s hard to move around on it. And with leather like you slip and slide on it so it’s great. Also, my couches will be a little bit higher than most normal couches just so that it’s a nice level transfer. So that it’s easy to get on and off of them.”
When items are out of reach in kitchen cupboards, Jennifer uses barbeque tongs to grab them. If something falls on the floor, “I’ll just grab anything that’s long that I could either pull it towards me or if I need to get something that’s under my bed I’ll just like grab the broomstick and pull it out.”
Jennifer has found that talking with her peers about the technical aspects of assistive devices has really paid off: “I’ve definitely gone to other patients for setting up my wheelchair. What they found and putting the angle in their seat or how they’ve angled their backrest or where they’ve put their wheels to have like a really good centre of gravity. When you get your wheelchair the company that you buy it from, they have technicians that will come out and set it up for you…. It’s a good place to start, but … try and get in contact with another person in a chair, just to sort of fine-tweak the chair to really make it so that it’s set up for you.” Jennifer also looks to people with lower spinal cord injuries than hers to see what they can do in their wheelchairs and then try to get as close as possible to emulating them. “Yeah I push the limits because I think if I can get close to them, then maybe I can push my body to the limit, I guess.”
Her advice to PTs, OTs and vendors is to listen to what a person needs, but show them a variety of devices, “Like not to show like one particular style because I have had that happen before…. And then I find out that there’s many other styles out there and I, I kick myself and I say, ‘Damn, I wish I knew that that was out there because I would have chosen that instead.’” Jennifer continues, “And I would say really listen to what the person’s needs are, and to do like sort of a future look for it on the person because she might be a little down and out in the beginning but there is a lot of room for improvement. It may not fit in the beginning and it may not be totally quite suited in the beginning but the person can grow into it. And then it sort of eliminates problems in the future and a lot of doing stuff over again because that becomes a real pain in the butt.”
Jennifer’s final piece of advice: “I always keep my cell phone on me.”
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